The Cancer Book, Part Two | Keeping Track of My Breast Cancer

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Once I was in posession of my perfectly un-pink, spiral bound notebook, I set to filling its pages.  In the early days, it was merely a to-do list: long distance friends to call before anything went on facebook– that’s no way for them to find out I had cancer, letters to write– authorization for friends and family to pick up my kids from school if I were unable, prep for diagnostic procedures.  I carried it with me everywhere, even to the bus stop.  Nurses would call all the time, with very specific prep for upcoming procedures or with more appointments for me, and I liked to have my book so that I could write everything down in the same place.

My cancer book evolved, becoming a place for me to write questions to ask at my next doctor visit.  I was always careful to leave space for the answer below the question so that I didn’t have to turn the page back and forth between questions.  When I sat down in her lovely office for my very first meeting with my oncologist, she saw me pull out my notebook and told me that I didn’t need to worry about writing things down, she would write down everything I needed to know while we chatted and I could take her notes with me.  I tried not to take any notes the first few minutes, but I couldn’t help it.  I’m so glad she didn’t challenge me– taking my own notes was part of my process.

During chemo,  I got pretty hard core with my cancer book.  Each day, I would draw a horizontal line to separate the page for a new day.  Besides the day of the week and the date, each day was labeled to help me track my response to chemo.  “R2D1″ corresponded to the first day of the second round of chemo.  On the left for each day was a column of the meds I needed that day with checkboxes to mark when I took them.  Since I was supposed to take my temperature each day to catch any infections early, I always left a blank where I could record my temperature.  I made notes about my sleep– how long I napped and how well I slept at night.  I would record any symptoms or reactions, things like hot flashes and bone pain, and when I started taking taxol, I also had a section where I recorded the extent of my neuropathy.

Now that I write it all, that seems like a lot.  It really wasn’t that much, but the repetitiveness really helped it become second nature.  Having it all written down made it easy each time I headed to the doctor, I could quickly give her solid details and she could assess if there were things that we should change.  (We changed my meds several times based on how I was feeling.)

Out of chemo, beyond surgeries, the cancer book doesn’t live in my purse anymore. While I don’t write down every single headache, if I notice something a few days running, I make a note. It’s really reverted to the stage where I write down questions or concerns for my next appointment.  Whether it was during chemo or now, in that crucial stage of survivorship where the fear of recurrence is always lingering just beneath the surface, it’s amazing how much easier it is to see patterns emerge when looking at pages in a notebook instead of trying to recall the details on my own.

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My Cancer Book, Part One | Keeping Track of My Breast Cancer

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That Friday afternoon I found out that I had cancer.  By Saturday, I was already making lists.  I’m a list-maker and a note-taker. They keep me focused, on track.  Even if I lose my grocery list, merely the act of making the list focuses my shopping trip.  Tuesday, I had a diagnostic mammogram and the MRI that taught me the value of a pair of stretchy pants and a Xanax.

After wrapping up my morning in the women’s health center, Sally and I headed out shopping.  I’m sure we stopped at Blue Mercury because, well, it was right there, and who doesn’t love to look at pretty makeup? And then we hit the rest of the shops in Clarendon in search of a notebook.

I’ve always been a note-taker.  I can remember taking notes in high school, when the teacher’s pace was too slow for me.  I had these special felt tip pens– in red and black– which I used to take painstakingly take notes, perfecting my penmanship to fill the silence while my teacher paused to let everyone catch up.  Graduate school taught me to keep a very tidy scientific notebook, carefully tracking experiments with very specific timetables and many steps.  I would frequently map out my day to five and ten minute intervals to be sure that I didn’t miss an important step or seminar.

When it came to my cancer, I knew that I needed a notebook.  I had a few qualifications.  First and foremost, it could not be pink.  I can’t emphasize that enough.  There would be no pink.  The next most important thing: it must be spiral bound.  I am a voracious note-taker, and it’s hard to write things down quickly, neatly, correctly in a bound journal that won’t lay flat or let me flip around the used pages to take notes while holding it in my lap.  This particular requirement nearly drove Sally nuts as we shopped.  She is an artist, she studied graphic design. She loves pretty things.  I wanted a lovely notebook, but I needed a spiral bound notebook.  (That had no pink.)  Sally showed me so many lovely journals at The Container Store and Papyrus. They really were lovely, but they weren’t spiral bound. I left Clarendon empty-handed and Sally headed home to pick up her kiddos from school.  I hit every other shop I could think of before I had to leave for the bus stop.  I was hopeful heading into Barnes and Noble, but struck out.  Discouraged, I stopped in Michael’s to fill my final fifteen minutes, and I headed to the sketch books. I found it!  Not a lovely floral or geometric print. Just an understated navy cloth covering, but it was spiral bound.  The paper, while unlined, was a luxurious, heavy stock.  Even better, this book had two features I didn’t know that I should have been looking for: a pocket and a magnetic flap closure.  In that pocket, I could stick any papers from my appointments until I filed them at home.  I kept prescriptions and orders for tests in that pocket so I would have them when I needed them.  The best thing in that pocket? Favorite pictures of my kiddos and family, so that I could be a proud mama and show them off anytime a doctor or nurse asked about my kiddos.  The magnetic flap closure held all those pictures and important papers securely inside.

Stay tuned– up next I’ll give you a glimpse into how I filled (and continue to fill) those heavy, thick pages.

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Coming Soon to a Doctor’s Office Near You | Breast Cancer Treatment Guide

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You know those magazines that lay on the tables at your doctor’s office? I guess it’s more because of my stage of life, but I tend to think of all the pregnancy mags they have at an OB’s office.  There’s a new one every quarter or so, except they all have essentially the same information, just repackaged for the next crop of pregnant moms.  Apparently, they make these magazines for all kinds of conditions, and of course, breast cancer is no exception. image

This Breast Cancer guide is published by Healthmonitor and is offered to patients for free in doctor’s offices.  I was contacted by the editor who had come across my blog and was hoping that I would contribute to the upcoming issue.  She had gleaned several things from my blog and used a few tips that worked into the issue.  I sent her a few photo options, but I love that she used this one– it’s one of my faves from a session Sally did last May. For some strange reason, I really love that I can see my port scar just under my collarbone.

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I’m sure it will eventually be available online, though for now, you could look for it when you head in for your annual mammogram!  The editor sent me a PDF to preview this week.  I have to admit feeling a bit starstruck (and a bit like a nerd!) when I recognized Shana of The Mom Edit (formerly Ain’t No Mom Jeans) on the page before me!  She’s a fun mommy fashion blogger who I followed before she was diagnosed with breast cancer last year– though I must admit I followed more closely after her diagnosis.

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I appreciated the opportunity to be a part of this project.  I’ve been honored to write for the Arlington Magazine and to do the interview on Let’s Talk Live, but this magazine will put the name of my blog in front of actual breast cancer patients.  I am humbled by the idea that newly diagnosed women, looking for any answer they can find in the stack of information they take home from the surgeon’s office, might read my words or head to my blog and learn something that will help them or give them a little extra confidence as they approach their treatment.

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Bald Heads and Weather Girl Hair | Hair Loss and Wigs after Chemo for Breast Cancer

Perhaps the only picture taken of my while I was wearing my wig...

Perhaps the only picture taken of my while I was wearing my wig…

As I look back, I regret how I used this blog when I was going through treatment.  It was more of a weekly check-in, just to let people know that I was still doing fine.  Truth be told, sometimes I only checked in once a week because I was busy doing fun things and napping and just didn’t feel like spending my precious awake time on the computer.  But still, I wish that I’d had more pictures of all the fun things I was doing– pictures of me in my favorite scarf and fabulous boots wandering around Old Town with Sally, pictures of me in my favorite smartwool hat from Athleta hanging out at the bus stop with all my neighbors, watching the kids play.  Pictures showing that it wasn’t always all that easy, but that it really wasn’t all that hard, either.  And I wish I had pictures of those few times I actually wore my wig.

I didn’t think that I wanted a wig, but it really seemed like it would be easier for the kids if I had one.  Since insurance paid for it (or most of it), I went ahead and got one.  I did my best to get one that looked like my real hair, but really only wore it to church.  It felt so strange, so disingenuous to wear a wig over my bald head.  I’ve also always been a “fusser,” I fuss with my hair constantly.  I tuck it behind this ear, then that,  smooth it out over my neck.  Even with a good wig, that’s just not a great plan.  It starts to get all tangly and before you know it, all I could think about was how much my hair felt like the hair on Emma Clare’s American Girl Doll.  Not a good feeling.

One Sunday, apparently the Sunday after chemo (I can tell because the steroids made me all flushed for several days), the youth director took photos of everyone to make a directory of sorts to hang on the bulletin board.  As far as I know, this is the only picture of me actually wearing my wig, not just playing dress up. (Oh wait, I did find one other picture– even worse than this one– that I took the night after I had my head shaved.)

It was a really good wig, but I only wore it a handful of times.  I think I somehow felt stronger without the wig– like I was showing that I was strong enough and healthy enough that I didn’t need the wig.  That said, there are a lot of women who want to wear a wig for lots of great reasons.  My kids didn’t mind me being bald, and I was so thankful for that.  I have one friend, though, whose son found her bald head very upsetting, so she wore her wig most of the time.  If I were working, especially in an environment where I dealt with clients, I can see wanting to hide my cancer– perhaps they might think I wasn’t up to the task or that they were “helping” me by taking their business elsewhere. If I thought I were going to wear my wig, there are definitely some things I should have done differently.  A shorter, straight wig would be much easier to take care of and wear on a daily basis than the long, wavy locks I bought.  If someone were trying to do the “wear the wig everyday and keep the cancer thing under wraps” thing, I’d probably suggest she cut her hair into a short bob as soon as possible– a style that would be easy to replicate with a wig.  It was mere minutes into our first wig shop outing when Sally and I started referring to that as “weather girl hair.” I hope that doesn’t offend any weather girls.  But seriously, watch the news for a while and you’ll totally get it.  At any rate, if she’s got weather girl hair to begin with, when her hair starts falling out, a quick shave and a swap with the wig might not be all that noticeable.

It’s so funny to me that I desperately wanted to keep things normal for the kids, yet I thought nothing of showing up for a “normal” school event with nothing more than a scarf covering my head.  Either way, especially when she has cancer, a woman should do whatever it takes for her to feel stronger, more beautiful, more powerful.  She should do whatever she wants, whether that means having the best weather girl hair out there, or heading out with a shiny bald head and some great lipstick.

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Navigating the Challenges of Cancer | A Video Series with ASCO

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Back in December, when my hair was short and Emma Clare was in the throes of Christmas Drama drama, I had the opportunity to spend an afternoon at ASCO recording an interview that would be used as part of their “Navigating Challenges” video series.  The American Society of Clinical Oncology (ASCO) is the professional organization for oncologists– they publish an academic journal, organize several conferences for oncologists to meet and discuss research, and they serve as a resource for oncologists across the country and around the world.  They also sponsor and maintain the Cancer.net website– a reputable resource for cancer patients and caregivers.

I spoke a couple of times in two different videos: Making Decisions about Your Cancer Treatment and Finding Emotional Support after a Cancer Diagnosis. They are a compilation of interviews with oncologists and cancer survivors.  In all honesty, loyal readers probably won’t hear anything new from me, most of the topics I’ve already discussed here. I talked about the importance of limiting internet research to only the most reputable sources.  I reminded patients and caregivers that it’s important to accept help when they need it, and that there is value in sharing experiences and stories with others going through the same things.

I’d like to think that someone who has just been diagnosed with cancer might watch these videos and learn something that will make the process a little easier.  I learned something, too.  I learned that I move my head a lot when I talk, I look up and to the left when I’m thinking, and I really love my hair that short!   (I may have to work on at least a couple of those…)  And while I can’t say that I didn’t already know it, trying to get a screen grab to post here showed me yet again what Sally knows all too well– I blink a lot!

It was a privilege to be part of a project with such a big potential impact.  This series, Navigating Challenges after a Cancer Diagnosis, was possible because of the generosity of the Livestrong Foundation and the Conquer Cancer Foundation.

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Eighteen Months Post-Chemo | The Pixie Grow Out Saga Continues

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Ah, what a difference a little hair and make up make!  Thought I’d give another update in the great pixie grow out saga. Not because I need to see more of my face on the screen, but because I keep looking for pictures of other people’s!  It’s hard to get an idea of what to expect when you’re waiting for hair to grow back from nothing.  So for those keeping track, my last chemo was February 1, 2013.  That makes this just over 18 months of growth, though I have been getting regular haircuts to keep it under control, the most recent was last week.  On the left, you can see how long those front pieces are getting.  I think they should tuck behind my ears by Christmas.  But on the right, you can see that I’m a hot mess when I go running now– my sweaty band keeps my hair out of my face, but now it’s getting too long to do the cute little thing where it all stands up behind the headband.  Clay just got his hair cut this week, and my hair is now officially longer than his.  Somehow, I think he’s a little happier about that than I am! But I’ve promised to keep at it, and Dragan says I should “play around with it,” so stay tuned for more ridiculous hairstyles!

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Talking Nipple Tattoos after Breast Cancer on Let’s Talk Live

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This morning I had the pleasure of chatting with Melanie and Rachel on the set of Let’s Talk Live about my experience at Little Vinnie’s Tattoo shop. Definitely a delicate subject, but in the past few months, I have been surprised by how many women who have gone through the many steps of reconstruction following breast cancer are unaware of their options for nipple tattooing.

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I have to confess being a little starstruck by all the behind the scenes views…

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I also have to confess about being a little nervous– I’m happy to talk to people about just about anything, but this is TV. In the internet age. One blunder can live on forever.  I talked to a friend who is a news producer, and was so thankful for her advice and encouragement. She told me not to over-prepare, just to treat it like a conversation with a friend.  I mostly tried to think of things people might want to know and make sure that I had an idea of what I might say.

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The only place I came up blank was on the “why” question.  Why would I want to talk about nipples on TV? Why do I blog at all? I’m not really interested in my fifteen minutes of fame, though I guess all the nipple talk could get me that.  As always, needing to write something in this blog (or, in this case, say it on TV) helped me realize something for myself. Thanks to my education, I had an uncommon confidence in my diagnosis and treatment. For the most part, I knew what to expect, and that made it so much less scary. Years ago, in graduate school, when I thought I would like to help educate patients, caregivers, and advocates, I was focused more on education for the sake of knowledge.  Now with the understanding of a patient, I want to educate for the sake of the patient– I want to help other women find the confidence I had.

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If you didn’t catch the interview live, never fear, it lives online for all to see.  And if you’re looking for someone to talk about her fake nipples to your elementary school assembly or church group, get in touch and my people* will get back to you.  Because I’m sure that talking about nipples in public is a highly marketable skill.

*And when I say “my people” will get back to you, I totally mean me.  If I had people, they would clean my bathroom and I would still answer my own emails.

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Stay Tuned | Run Lipstick Chemo on Let’s Talk Live

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Big news, loyal, local readers! Come Monday morning, I’m totally going to be a huge celebrity. If you want to chat or have coffee, now’s the time.  I’m sure my phone’s gonna be blowin’ up by Monday afternoon.

OK, probably not.  But Monday morning, I am going to be a guest on Let’s Talk Live on NewsChannel 8, discussing  my trip to Vinnie’s Tattoo Shop and nipple and areola tattoing after breast reconstruction. (Yes, I am going to be on TV.  Talking about nipples. What a debut!)  If you have any last minute thoughts/comments/questions on the topic, let me know, and they may make it into the segment.  And if you’re local, tune in Monday morning at 11am.  (If you’re not local, I’ll be sure to post a link so you can watch the segment online.)

So tune in Monday, and check back here next week for a link to the segment and maybe a fun recap!

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Chemo: Before or After Surgery | Neoadjuvant Chemotherapy

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It seems like I’ve been revisiting that morning in the surgeon’s office a lot lately.  After we talked about the fact that I felt pretty sure I wanted a double mastectomy, my surgeon confirmed the other thing I’d been thinking– that I would need chemo. My oncologist would talk to me about the specific drugs I needed, but my surgeon told me that I would have the option of doing chemo before or after surgery.  Again, she advised me that neither option had been shown to increase overall survival.  Again, almost instinctively, I told her that I wanted neoadjuvant chemo– chemo before my surgery.

It’s not uncommon to have the opposite reaction. Many women have a “get it out” kind of reaction and want surgery as soon as possible. But I knew that the only reason a patient receives chemotherapy is if there is a chance that even one teeny cancer cell has escaped past the original (removable) tumor. I couldn’t handle the thought that even one little cell was setting up shop somewhere else, growing and spreading even more while my body was healing from surgery.  I didn’t want to wait a few weeks for surgery and then at least six more weeks to heal before I could start chemo.  My oncologist agreed that was a reasonable conclusion, but also pointed out that she liked the fact that it would enable her to watch how my tumor responded to the chemotherapy in vivo– that is, in living tissue.  (Discovering I was a scientist early in our first meeting, I wonder if she knew how much the words in vivo would mean to me as a scientist? In vitro studies– cells in a dish– are crucial to the research process, but artifacts come along with the artificial environment, in vivo studies have so much more validity.) With breast cancer, tumor dormancy is always a big fear– that there are some cancer cells that can somehow evade chemo and sit dormant for years before they begin to grow again and cause distant metastases that can take a patient’s life. We know, in general, that triple negative breast cancer responds well to the chemo regimen I would be taking. But if I had neoadjuvant chemo, we would get to see how MY triple negative tumor responded.   My oncologist and I agreed, if even one cell of viable cancer made it through chemo, I would do another chemo regimen after surgery.  If that one cell could survive, maybe another one, one that managed to escape my breast, survived, too.  Being able to see how my actual cancer cells responded to the drugs gave my medical team such valuable information.  The only thing the pathologist could find in the breast tissue removed was some scarring– he could see where the tumor had died.  Every last cell was dead.  Of course, there are never any guarantees, but a pathological complete response after neoadjuvant  chemo is the best scenario I could have imagined after hearing the words, “You have cancer.”  If I would have had surgery first, and then chemo, it’s likely that the chemo would have been just as effective.  But with the original tumor removed, I wouldn’t have the confidence that the words “pathological complete response” have given me.  It’s always good to be in a good place, but it’s so much better to know that you’re in a good place, so that you can truly appreciate it.

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Pixie Grow Out Update

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Last week I saw a couple of women I hadn’t seen since the end of April.  They were shocked by “how long” my hair had gotten.  The kids have noticed, too, and Emma Clare thought that she should style it.  It started as one little sprout of a ponytail, but once she saw how easily she could put it up, my head was quickly covered with little sprouts.

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It is getting long, though.  And it’s getting hard to control.  I wanted to share a picture with a real hairstyle, but I don’t seem to be happy enough with it for more than ten minutes after styling it. Thankfully I’m heading to get a haircut this week, maybe Dragan can come up with something to control these locks a little better than what I came up with on Saturday! (I’ll try to have a post-haircut pic up next week!)

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